Monday, February 11, 2013

The Unfairness of Acronyms

It occurred to me today after my second IEP in two weeks that there are just some things I just shouldn't know. I'm not a teacher. I think I *maybe* wanted to be a teacher for about 5 minutes before I realized that I do not have nearly enough patience. I do recall wanting to be a Special Education teacher but I don't really know why that was what I had chosen. But seriously, I do not have a fraction (mili-fraction, is that a word? It should be) of the patience I see in the teachers at my sons' school.

My degree doesn't even come close to education, law, medicine or psychiatry but with my boys, I can certainly see where studying each of those even for a little while would have been most helpful. My first run in with the plethora of acronyms I would one day know and use daily in normal conversation was DSM-IV. I had NO IDEA what that was when I read Cameron's first formal evaluation and no one explained it to me at the time. Actually, I remember reading that evaluation while sitting behind my computer with a search engine open. There were that many words that I didn't know. But right there at the top was Cameron's name and then DSM-IV: 299.00. First up, what was DSM-IV and secondly what did 299.00 mean?

That's Autism (according to the medical professionals) 

DSM-IV 299.00: is the Diagnostic and Statistical Manual (of Mental Disorders) - Version 4 (IV): Pervasive Developmental Disorders category (299) . Current or Active State (00)

But WAIT! There are changes... enter DSM-V and an excellent graphic that shows the proposed changes:

That day sitting behind my computer was just the beginning. Today I found myself saying,
"The IEP has to be continued after the SE completes the FBAs and Data Collect. Then we can make the IEP goals more accurate and verify that there are enough PBS in the BIP."
What did I just say?  About once a month, I think to myself: WHY DO I NEED TO KNOW THIS STUFF??? The Answer: 299.00

After almost EVERY meeting, I have a list of things I have to go home and look up. Sometimes it is something I've looked up before. Because just because I know the acronym, that doesn't mean I know what it is! I wonder if I will ever fully understand this diagnosis, all the ins and outs, all the educational implications and medical issues.

Forget what my diploma says (I don't even know where it is!), forget that I ever received that BS (another acronym!), I'm currently in the school of Autism and graduation day is far far away. Until then, for those of you in the trenches like me, here are some of my favorite cheat sheets. You may not know what each acronym means or the overall purpose of the hippocampus but this will get you by until you can go home, grab some hot tea and a plate of cookies, a notepad and a pen and Google to your hearts content.

A non-exhaustive list of Special Education Acronyms, I think I could add a few:

The brain... ahhh... the brain. It is amazing that it can do as much as it does. 

I just LOVE this graphic of the brain and which parts do what. I imagine seeing it in some old-time book with brittle pages. 

Above all, understanding the Acronyms don't mean a thing unless we understand our children first. The most important part of being my Son's advocate isn't about understanding what words mean what, it is about understanding THEIR words (gestures, signs, PECS) and being their voice. They rely on me to speak for them and if I don't understand them, I can't do my job.

Sunday, February 3, 2013

IEPs and Options

(**this is seriously what my brain looks like before an IEP**)

There is a reoccurring theme in my life... options. While I am thankful that I have options to chose from in life, I will admit it makes everything damned difficult. Going in to college my grades were consistent and I scored the exact same score on every single section of the ACT. When I went to the guidance counselor to inquire about a good career path I always heard, you can do anything you want. That is so not helpful to a person who has no idea what they want to be when they grow up (and still doesn't).  In the end the fact that I switched majors almost as often as I changed the oil in my car has served me well as a Lunatic Autism Mom.

Maybe it's my personality, maybe it's the way I do things but again and again I tend to look for all options and then cross them off one by one until an obvious choice presents itself (at least I HOPE an obvious choice presents itself, this isn't always the case).

Another thing that tends to serve me well as a Lunatic Autism Mom is naivety. That isn't to say un-educated but naive. Going in to an IEP, I have my list of options, thoughts and notes and I am naive enough to think that the IEP team will be willing to hear them. Lucky for me, that has always been the case (although I know that isn't always the case).

I have an IEP tomorrow, a big one. My 11 year old is going to Middle School next year and the big question is... where? His "team" have completed an FBA (functional behavior assessment) with two data points (5 teachers and staff answering the same behavior questions in November and January. We have pulled all the data with how often he accesses some of the key elements of his school program and we have updated the IEP to reflect an accurate picture of his day and the supports he requires to make it successful. It is my hope that all of this information will lend itself to an obvious school placement.

It will not. 

Because I fear there isn't one. The Hubs and I have compiled a list of options, thinking both "inside" and "outside the box". Creativity, by the way, does not lend itself well to educational options. Some of the options are completely unacceptable and it would take a miracle for me to approve them, but when I make a list EVERYTHING goes on it.  In the end, our list looks like this:

  • Full Inclusion
  • Pyramid Program (behavior based program)
  • 50/50 Inclusion & Pyramid
  • Non-Public Placement
  • Out of county placement
  • Homeschool
  • Inclusion for Core Curriculum only (science, math, language, etc), Homeschooling for everything else (art, PE, music, life skills).
  • Online School
  • Moving into the woods, putting up a 15 ft privacy fence, sticking our heads in the sand and hoping it will all figure itself out in the end. (kidding, sort-of)

I can list major Pros and Cons for each of these. I wish so much that I could include an option for "high functioning special needs classroom with inclusive opportunities", where I live this isn't an option.

So, tomorrow we have the IEP, it won't be our last for this issue.  I fear it will be one of many but, today, all day today I get to live in a world where there are options. Tomorrow, the "team" will take many of these away. I'm not sure how it will go and I don't really know what to do to prepare. But, I am 100% certain that by lunch time tomorrow I will be a very large, numb, mass of exposed nerves.

Thanks for listening to my rant. <3

Thanks Ryan. 

Friday, February 1, 2013

Sometimes Tears Fall

Sometimes tears fall. There are days where you wonder why life has to be so difficult. There are days where you cry out of joy for a spoken word or a direct look in the eye. Today I cried for a hug.

There was a time when I couldn't take my boys to have their picture taken. Like many barber shops and kids hair cutting locations, we had been kicked out of many photography studios for my boys being "uncooperative".  I had decided to give up on the beautifully staged pictures I saw on so many other mom's walls. I tried to come to terms with the idea that I would never have a candid shot taken by a professional photographer that would capture their spirit on film.

Lucky for me, I belonged to a Mom's group. I had tried Mom's groups before but usually couldn't participate due to appointments or was asked to leave because of Cameron's erratic behavior, but this Mom's group was different... it was primarily online. They had play groups and Moms Night Out, book groups and forums for selling all my baby crap. I loved this Mom's group. Those days when we couldn't go out, I could stay in and still belong.  Not only did I make some very close friends that I keep to this day, I was able to receive help and in turn help other Mom's going through the Autism diagnosis process. I also met a very patient woman who was just starting her photography business.

She offered "mini" Christmas sessions in her home at a reduced rate and said that the boys behavior would be no problem. I was so worried and stressed about it but willing to take the chance on getting a beautiful picture for my wall. We weren't there long, we didn't have to be. As my friend promised, she was patient and let them do that they wanted, snapping pictures all the while. When I received our pictures on CD a little later I cried. There was my boys, their personalities shining through! We finally had a beautiful family picture and a picture of my two boys together... PLAYING TOGETHER. These pictures mean the world to me.

I tell you this story not because I want to commiserate on the difficulties of having a family photo taken but because this wonderful, amazing, talented, photographer and friend of mine lost her home and two daughters in a fire last night. Her husband, youngest and oldest daughter survived.
(photo from Frederick News Post by Travis Pratt)

I learned of this after I had dropped off my boys at school and by the time the school day was out, my amazing Mom community had banded together to ease the burden of this family by setting up donation sites and fundraisers all over the county. Their house was a total loss, saying they lost everything is an understatement with the loss of their beautiful daughters as well. If you would like to donate, here is the information: Lillard Family Donations

So today when I picked up my boys, I asked them for extra hugs. When they asked why, I said that I was sad today because I had a friend that was sad. When they asked me why I was crying, I told them that sometimes people cry when they are happy, sometimes people cry when they are sad and sometimes when you know someone is hurting really really bad sometimes tears just fall.